In the summer of 2018 I had just retired from thirty-six years as a college professor; I had two grown daughters, two step daughters, and six grandchildren. We were in the process of selling our house in northern New York on the Canadian border and moving to Cape Cod where I intended to pursue art in between continuing to travel the world. I was generally in excellent health. I enjoyed hiking and long dog walks.

There is a lot of cancer in my family. My mother died of lung cancer at 74, while my father survived prostate and colon cancer. My grandmother had breast cancer and my grandfather died of colon cancer. Many other relatives had colon cancer. In my mind there was a real possibility that I would get cancer, most likely colon cancer.  I lived in a rural, medically underserved area of upstate New York. In June of 2017 I started having a sharp but not terrible pain in my left lower pelvis. One of the oddities of my story is that I had experienced a similar pain about eight years earlier and my then primary care physician had sent me immediately to the hospital for an ultrasound and then a CT scan (without contrast). I had had a hysterectomy in 1983 for fibroids (non-cancerous growths that develop in or around the womb) and apparently that made it difficult to find my ovaries in the tests. The radiologist felt that if I had something on my ovary it would have shown up. For unrelated reasons, I soon switched to my new husband’s doctor, a family practitioner. 

So in summer 2017, my idea for pursuing the pelvic pain was to get the colonoscopy (examination of the bowels) for which I was due anyway. I thought I’d check that off first and then see a gynecologist. However, the gastroenterologist (practitioner dealing with issues of the digestive system) was so overloaded with patients that his office canceled three scheduled colonoscopies and it took over a year for me to get one on August 1, 2018. Meanwhile the pelvic pain was persistent and getting more uncomfortable until April 1, 2018, when something changed dramatically. When I had a bowel movement I could feel it pulling on the location of the pain. At this point I was panicking and quite sure I probably had some kind of cancer.  I went to my doctor immediately. I explained my symptoms and he basically dismissed them, telling me it was probably scar tissue.

Worried, I made an appointment with a gynecologist for May 2018, but that also got cancelled and rescheduled for July 16. The gynecologist didn’t order a CA-125 or examine me. He set up a transvaginal ultrasound for August 3.  After the ultrasound I didn’t get a call, so assumed it must have been okay. I showed up for my follow up appointment on August 10 only to be told in the waiting room that the doctor had been called away, but they had found a mass on my left ovary and the doctor wanted me to have an MRI. However she said there was no rush. They gave me an appointment to have one in two weeks and then said the doctor would be off for the few days after the MRI so I could see him in three weeks.

My daughter is a kidney specialist in North Carolina and I don’t like to pester her with my medical concerns, but I called her. Being familiar with the level of health care where I lived, she said get on a plane asap. She had a lot of respect for the gyn oncologist at her hospital. I flew down two days later, had a CT scan with contrast the next day and saw the gyn oncologist the following day. I was super lucky because in New York I would have had to go to Burlington, VT, three hours away, to find a gyn oncologist.  I had a PET scan a few days later because the CT scan had shown quite a few nodules in my lungs in addition to the tumor on my left ovary/fallopian tube which was about 7.5 cm by 5 cm. The lung nodules turned out not to be cancerous. Robotic surgery was scheduled for August 28, the same day we were closing on our house in New York. So we flew back up there to get ready for the movers and then we drove back to North Carolina to live for the next five months of treatment. While I am fortunate to have good insurance through both Medicare and my husband’s former employer, we had to pay to rent a place to live and it was expensive. The timing of all this was frustrating but also lucky because I had retired and we had sold our house so a lot of practical worries were taken out of the equation.

I turned out to have stage 3b high grade serous ovarian cancer.  My gyn oncologist is an excellent surgeon and cares greatly about his patients but was a bit too aggressive for me. When I saw him after surgery he said if I didn’t have chemo I’d be dead in six months. He repeated that twice. He wanted to me to have avastin and dose dense taxol.  I got a couple of second opinions which made me comfortable refusing both of those and going with three weekly carboplatin and paclitaxel.

One silver lining of my diagnosis was the love that enveloped me from family and close friends. I had so much support during surgery and treatment. It was truly beautiful. In a way that made it all the harder when Covid hit in spring 2020 and I was unable to see my children and grandchildren for well over a year.

I found the chemo quite difficult to tolerate. I would be fine for the first four days after the infusion but then have six days of being mostly supine. By keeping a journal I was able to see the patterns and cope better with them. I think my worst day was the day of my second chemo treatment. When I saw the doctor that morning he told me I had a deleterious PALB2 mutation and maybe I should think about a double mastectomy. Also that my sisters and daughters needed to be tested. It turned out one sister and one daughter have it as well. That day I had a severe reaction to the taxol which was extremely frightening.

I had a CT scan after the fifth cycle because of some discomfort in my ribs and I had a large lymph node. We assumed it was cancer and panicked. They gave me a PET scan and it turned out not to be cancer.  Thus after completing chemo I was NED (no evidence of disease), and we quickly moved to our new home on Cape Cod. Some of the difficult after effects of my initial treatment are neuropathy in my feet and fingers and a very painful vagina when having sex, because my vagina was shortened and must have scar tissue that hurts. I was also extremely weak when I finished chemotherapy and ended up a month later in the hospital with pneumonia and sepsis.  I then developed lymphedema and then found I had a blood clot in my leg. I went to physical therapy and was lucky to find someone who was experienced with cancer patients.  It took me about eight months to start feeling energetic and strong again.  I had transferred my care to one of the top U.S. cancer centers, in Boston.

Nine months after finishing first line of chemo I had a recurrence. It was scattered around my peritoneum but stayed in my pelvic region. I then had six months of doxil/caelyx and carboplatin. I found this chemo much more tolerable. I liked the four week cycles because they allowed a good three weeks of normalcy each cycle. I had chemo on Tuesdays and was able to go to my art group on Wednesday, then get sick and recover enough to go the next Wednesday. This chemo only shrank the cancer by about seventy percent.  In April 2020 I started on the PARP inhibitor Lynparza (olaparib). It turned out that I had a somatic BRCA 1 mutation (meaning that it wasn't hereditary) that hadn’t shown up in the initial tumor testing. Over a few months the olaparib got rid of the remaining cancer so I was NED again. I’ve never been on the full dose of olaparib because when I started my platelets were very low.  I had the usual side effects for the first couple of months but I’ve never gotten over the fatigue. In the beginning I was sleepy. Now I’m not sleepy, just very fatigued to the point that it can feel like depression. I’ve been on olaparib for twenty-one months now and I’m very grateful it’s working for me. Nonetheless the anxiety of wondering when it will stop working can drive me crazy. I’ve done mindfulness and tried to focus on the positive, but I tend to obsess over this question. I know the data from the SOLO trials by heart but feel there needs to be more study of what’s happening with all patients on olaparib. Before I went on olaparib, I didn’t make any plans for the future, but since I’ve been on it I try to live as if I have a future like anyone else. I created a series of oil paintings based on microscopic images of cancer and had a show in September. Of course Covid has made it difficult to travel and do the things I’d like to be doing, but hopefully that is turning a corner now.

The Ovacome forum on HealthUnlocked has been a godsend to me. I found it right when I got diagnosed and I really feel connected to the people there, much more than on other online forums.